Tamoxifen vs AI clarity....

[linn65]

I went for my 2nd opinion whether to take the arimidex prescribed by onc after hormone testing...she said it was a useless endeavor for someone like me. I was pre- menopause when starting. And since chemo and tamox for a year those tests would show post-menapause, and I would need to be off tamox for at least 6 weeks to even get a blood test to show that. Also, the AI would cause more harm than good because it would stimulate my brain to mAke more hormones to make my ovaries wake up. Back on tamox for the rest of 5 years.

2nd a trial is being done called SOFT in removing your ovaries she said they will have those answers in June or December if that would make a difference and right now they simply don't know that answer.

My feet and hands.....my joints want estrogen and that causes pain in hands and feet. Adding a new vitamin called glucosamine hci and some people it helps and some it doesn't. I should know in 30 days. If it does nothing don't take it.

Dr. Kathy Miller was a wealth of Info and explained in detail tamox vs an AI for me. I am thankful for the referral from this board.....

Now just between adding the vitamin D and the glucosamine hopefully it makes a big difference in hands and ankles/feet....it's strange how my ankles, wrists and even neck pop now....I am like the tin man in the Wizard of Oz and need to be oiled up.

[IrvineFriend]

Hey Linn,

Nice seeing you again. Sound like you have a game plan. Hope you're getting out from under the snow and doing OK. Hoping the joints start behaving!

xoxo

[Becky]

You know, that Tamoxifen/AI thing happened to me. I went on Tamoxifen after radiation was over but really wanted to go on an AI because they are better but only work if you are post menopausal. I was 46 then. I had not gotten my period since my second chemo. So, we did the bloodwork which showed I was post menopausal. My onc switched me to Arimidex. About 6 weeks later, my period came back. I will never forget it as it was a Sunday and I didn't know what to do (about taking the Arimidex) so I called the office and left a message. Oddly, my onc was on call and called me and told me not to take it. My gyn saw me the next day and scheduled an ultrasound in 2 weeks. At that point, the gyn said that not only was I not post menopausal, I should be (sexually) careful as my ovaries both were about to pop an egg each (luckily my DH had a vasectomy several years prior). So my gyn and I talked and talked and I ended up getting an ooporectomy in 3 weeks. 3 weeks after that, I started Arimidex.

So yes, an AI can wake you up if you are on the pre/post edge as I was. If you look up alternative ways Arimidex is used, it can be used to help infertility (but you have to be premenopausal for it to do so).

I knew getting the ovaries removed is a bonefide way to be post menopausal. Hopefully that study shows it has benefit as well.

['lizbeth]

Hey Linn65,

I've been thinking of you and hoping that you were feeling better with the Vitamin D supplementation.

I am so glad you had that 2nd opinion with a Doctor that has expertise and cares about your health.

Wonderful information.

[roz123]

Linn - im in the same boat. Pre-meno on tamox when my periods returned about a year after chemo ended. I was tested several times and told I was menopausal but was NOT advised to go on an AI for exactly the reason Becky stated. Although it wasn't explained to me that they ovaries wake up only that being young we could snap out of menopause very quickly which I did (had my levels drawn 4 months prior to the p returning and it said I was meno)

as for ovarian suppression/removal - yes this is the BIG question. Does it offer an advantage. Answer is that until the results of the SOFT study are released they just don't know. They were supposed to be released at San Antonio last year but according to my onc they had so few incidences (reccurances) that the study was extended

I am having my ovaries shut down right now using Zoladex (like Lupron) if the studies show no benefit I will go off the shots - it there is a survival benefit I will pursue ovary removal.

for what its worth my second opinion onc at Dana Farber said tamox alone even with the return of periods was sufficient so yes there is no "standard of care" on this issue

anxiously waiting results myself as I really feel like cutting off your estrogen to early can lead to other serious health issues like heart and bone health

[Becky]

I also want to add other reasons I had my ovaries removed.

1. my paternal grandmother died from ovarian cancer
2. Several cousins, 2 aunts, my mother and my sister also got breast cancer. We have all tested (some recently where there are new findings) and we are all BRCA 1 & 2 negative. However, our cluster may not be environmental as the cousins grew up in different locations. Also, many of my mother's aunts and grandmother died from "some" type of cancer. My mom thinks Breast because nobody talked out loud about sexual organs then.
3. Maybe one day our family will find that we are positive for something that is newly discovered - "BRCA 3 or BRCA 4". That said, it is well studied and researched that removing the ovaries is beneficial for those that are BRCA 1 or 2 positive. Perhaps this was "scientifically" the best thing to do.

At the time, I was very afraid of ovarian cancer which my grandma did die from. It does not have as good odds as breast cancer. There were alot of pros and peace of mind for me to do this besides going on an AI. So I do want to clarify that using an AI was not the only reason.

Hopefully the SOFT study looks at segmenting the results - those who are BRCA positive, those who are not and those who are not but have a strong family history. Doing this helps because just think if they had tested Herceptin on everybody - statistically it would have failed because it only helps a small population but not everyone and it would have failed. Oophorectomy may be life saving for a certain population of those with breast cancer. They already know it helps the BRCA 1 & 2 population.

[tricia keegan]

I also decided at 46 to have an ooph and take Arimidex, I've had no regrets and continue to take it daily and will be interested in the results from that study.

[linn65]

I have osteopenia and have had it for several years before BC. The AI does not help with that and I would probably fall down and break a bone.

I was truly amazed that "Me" being on an AI and having the Mirena which caused my periods to stop 4.5 years ago made going on an "AI" even much more complex. I recorded our conversation, so I could listen to it and digest all the information she was giving me.

She explained it that Tamox was like an Umbrella for someone like me pre-menapausal when starting treatment. She believed my ovaries were probably in the stuttering phase meaning peri-menapausal. She said if the "Soft" trial comes back and it would be beneficial for someone like me then we will re-visit that idea. She said she doesn't like the ovaries simply because they are tricky little devils!! BUT, she still would wait for "me" to remove my ovaries (which I didn't want to do anyway). We did not discuss any advantages/disadavantages removing my ovaries except we still don't know if for someone like "me" the benefits.

The biggest thing I was "WOW'ed" by was me being on an AI could cause more hormones in my brain to release which in turn would try even harder to wake my ovaries up and we don't want that to happen because we don't want to make any estrogen. She said my ovaries could even be 25% awake, and I wouldn't have a period or know it. I could do all the hormone test's I had done by 1st ONC every week and could get a different result. Basically, all the tests would be convulted. My brain, my liver, and something else all make estrogen and the bloodwork would be different every week or month we did these tests and it was a useless endeavor (In my mind I wanted to smack or plummel the first ONC, a Man )!! For me an AI have all these unanswered questions but tamox is tried and true which I knew but did not understand, why.

No one in my family has had any kind of cancer. I am negative for BRCA #1 and BRCA #2.

Yes, I want to chop my foot off today (just one today)!! But I did drive 8 hours on Thursday and back home 8 hours or longer (I got lost even with my GPS on Iphone I didn't multi-task very well). I watched my son play his last seasonal college game and spent a couple days with him....

[linn65]

One more thing I had no idea how much your body needed or wants estrogen!! She said it was like I hit a brick wall instead of the natural progression of going through menapause and my feet and hand pain would have been something I would have had anyway just not as harsh and quick. But I just hit it hard and fast because of chemo, radiation and tamoxifen. She said her feet absolutely kill her by night time too and it was from menapause.